My MS Story

Sunday, September 15, 2013

I am very active in the MS community. I do as much as I can to educate and raise awareness about MS. I am a patient advocate and I share my personal story with the public, especially people who are newly diagnosed with MS and looking for answers and understanding about this very unpredictable and misunderstood disease. I have talked to people who believe MS means Muscular Dystrophy and they have no idea that MS affects the central nervous system. I didn't know anything about MS until a few months before I was diagnosed.

My employer is very passionate about supporting various causes and charities in the local community. Every year the company has supported my participation in the MS Walk as team captain of The MS Warriors. We have been among the top fundraisers for the past 5 years. There are quite a few people with MS that work for the company and participate in the walk. In addition, a lot of the employees bake goodies for our bake sale and make personal donations as well. Employees have looked forward to volunteering for this event every year. I think it's safe to assume that my employer is a big supporter of employees with MS, the MS community and finding a cure for MS.

Recently I have been dealing with issues regarding reasonable accommodations. For the past 4 years, I have had a signed agreement with my employer that provides specific accommodations for me in support of my condition. This scenario benefits both me and the company. I am able to be employed full time and the company is able to retain someone with a high level of experience and knowledge in my field.

I have been doing it for 4 years w/o any undue hardship to the company. This doesn't cost the company anything at all to accommodate my arrangement and it does not impact my co-workers. There is also a standard set by the ADA and EEOC for employing people with disabilities. Not only that but I don't abuse it and my productivity has always been great. I don't know why my new manager is unwilling to look outside the box?

Everything is not always black and white or right or wrong. That is a "dichotomus" way of thinking, when someone is unable to see the complexities of a situation. While this kind of thinking may have advantages for quick decision making, it can lead to a gross misunderstanding between people who have incompatible opinions.

My current agreement will need to be renewed at the end of 2013 but the company has the right to end it at any time. In this situation, why would they want to? Especially when they support everything else that I do. I am a reliable, trustworthy employee and people within the company know that when they need assistance from my department, I'm one of the first people that they reach out to. I am always courteous and professional. I answer my phone and respond to e-mails quickly and efficiently.

MS fatigue is unique and it causes me to feel like something has depleted me of my energy half way through the day. I don't really "look" sick or in need of any special accommodations but as most people know, MS can be very deceiving when you are on the outside looking in and it doesn't affect you personally.

Honestly, I actually feel like I am being harassed and caused undue hardship by someone's lack of understanding and unwillingness to accommodate something that has been working quite well.

Strength and perseverance is something that most people with MS possess. We believe in moving forward and maintaining the greatest quality of life possible. We want to be employed just like everyone else and sometimes we do need a hand up in order to maintain our job. I hope the company doesn't allow one person to ruin something that has been going very well due to their lack of knowledge and understanding.

Do I have a sense of entitlement and expectations from my company? Yes, because I have been with the company for 13 years. I have a good reputation because I go above and beyond every single day. I love my job and it shows.

MS—Now You See It, Now You Don’t - The symptoms of MS can come and go. Other people with MS live with symptoms that are not visible. To hear the comment, “Well you don’t look sick” can be very frustrating to someone who has MS. Sometimes friends, family members and employers don’t understand symptoms such as fatigue, and mistakenly label the person with MS as lazy. Multiple Sclerosis Foundation